For the last 5 years my husband has experienced numerous health issues that we are learning are all related.  We have gone through SEVERAL specialists, etc with no answers.  My question is why are some of these docs so quick to misdiagnose when some of the tests have come out negative for the diagnosis they have chosen to give? Even with Great Insurance you can get screwed.   It is highly frustrating.

Anyway my husband started having black outs.  Neuro thought it was absence seizure activity.  EEG came out negative.  Then a new symptom started along with some others -- CPK (Creatine Kinesis aka CK) Levels came out over 2400 (Norm Level is 200 and below).   THEN his Potassium tanked.  Then there was Gastro pain.... There was also Nausea, Severe Fatigue, Ataxia, Muscle Atrophy, etc  The list really goes on and on there are 51 symptoms and my husband fits most of the symptoms except 4 of them.  One that it didn't list is hair loss over time which is also a symptom (my husband fortunately hasn't had this one as of yet).

My husband has had MRI's, EEG's, CBC's, Biopsies, etc.  Come to find out his HCG/HCMG (I think it was called) was High --- this score determines cell size.  Also his Rheumatoid factor is triggering with a high score. He also tested positive for Small Fiber Peripheral Neuropathy.

FINALLY!! Today Gastro doc mentioned Hey remember I mentioned your Red Blood Cells are enlarged and we were not sure why?  Turns out it MIGHT be a B12 Deficiency.  Although his B vita score came back on the low end of normal it may not be HIS baseline.  This could be due to malabsorbtion of the vitamin itself during digestion (the b vitamin is absorbed into your colon area), or many other factors.

FOR THE FIRST TIME..... in over 5 YEARS and a LOT OF Permanent damage to his body we may have answers OR at least A HUGE PIECE of the Puzzle to narrow it down to just a few causes of the deficiency.  I am actually excited about it and my heart started beating rapidly going down the symptom list. This is treatable for the vitamin deficiency.

AFTER GOING THROUGH THIS for over 5 years with my husband my advice is this.  BE YOUR OWN ADVOCATE!!!! Unfortunately there are a LOT of bad docs out there or docs with tunnel vision into their specialty. I have fired quite a few when they have stopped looking at avenues and tried to treat him for something that was never there. ALSO REMEMBER there are GOOD DOCS out there that are willing to have an open mind and go down the avenues not previously traveled. HANG IN THERE, going to be a bumpy ride!!

My husband was in the ICU at one point and they were killing him.  After his diagnosis with epilepsy at one point he had a black out and was admitted to the ICU.  They pumped several anti seizure drugs into his system that were actually triggering seizures. After 4 days I couldn't take it anymore... I pulled a full list of what they were giving him and did my homework.  After several hours on the internet looking at medical journals online, side effects, history of medicine, etc  I realized the mixture of what they were giving him could actually kill him.  I called the ICU at 2:30 in the morning and asked when his next dose was for all these meds and they said 6am.  I said DO NOT GIVE HIM anything and I want to talk to the doc.  Well guess what?  They gave him the meds anyway and the Doctor ignored me.  Immediately I fired her and her team of residents and demanded my husband be released.  He was out by the next day. ....... walking out on his own two feet.  They still insisted that he had epilepsy when in fact the EEG's all always came out negative for seizure activity EXCEPT when the were pumping him with all the anti-seizure meds.  This may have caused him permanent Neuro damage. I still cannot believe that all of that really happened.

  It is super important to find docs that are going to give you the answers and fight for your health, it is there job!!  These folks spend quite a long time in school and their residency... going into school they had an open mind to the possibility that hey not everyone is text book. Plus always remember they can always be replaced. 

ALWAYS ALWAYS ALWAYS get a second opinion!!!! IF YOU HAVE TO get a third, fourth, fifth, etc.

DEMAND that you are taken care of. DO NOT take NO for an answer.  If you have found something online that may fit your diagnosis; print it out and take it to your doctor and at least open their mind to your mystery.  The body is a complexity of different things.  Just remember they all work together. Pay close attention to your skin, skin coloring (look for paleness, yellow, blue, etc -- these are all indicators of different things), nails and cuticle areas, eyes, etc.  Usually by paying close attention to these things they can indicate something more.

ALTERNATIVE MEDICINE is also amazing.  Don't rule it out.  My husband was ill for quite sometime before we found out about the metal toxicity and a friend of ours had mentioned hey why don't you get a Hair Analysis?  We followed that advice since the docs were not finding anything at that point and my husband had 3x the highest levels of lead as well as many other metals that were horridly high.  My husband immediately started chelation therapy to remove the metals from his system.  You then have to take doses for the levels necessary to sustain your body appropriately.  The pill form is very slow in working and I would suggest the IV version which is not covered by many insurances and can be quite pricey and also very risky so consult with your doc before you take the chance as removing metals from your body can actually cause death.  Human beings need metals in their systems but in dosages that our body can sustain in a healthy way. Too much and your body can be thrown for a loop.

KNOW what you are putting into your system, whether it be food, vitamins, etc   ALSO be aware of your environment.  Environmental factors CAN indeed have a place in your health.

IF YOU are not sure about something and feel off -- get bloodwork done and demand a FULL VITAMIN scan.  You would be amazed at what you or your doc may be missing.

LAST BUT NOT LEAST ~ KEEP AN OPEN MIND!!!!!!!!!!